I can remember my dear father often using the title of this post.  I would often chat with him and he would say : ‘very interesting’.  I am sure it was a catch phrase from somewhere but I will always remember it as one of his sayings and gives me a lovely reminder of a great dad on this cold morning in Cleethorpes.

Yesterday was very interesting indeed!  Maureen was up by 9 am and in good form for the whole morning.  We had our breakfast together and commented on bird behaviour in the garden.  The good news being that  ‘Blackie’ is back – we think: a blackbird that responds to Maureen’s whistle.  We can’t be sure it’s him, only time will tell when Maureen ventures out and tries to feed him grapes!

The morning went well with Maureen assisting her Chef with preparation of the Sunday Lunch.  My new plan to be a bit tidier in the kitchen was appreciated by my humble assistant – possibly coach.  As always we larked about -even danced- to music  as we prepared lunch.  Music while you cook is always on the menu here.

After lunch we had an afternoon nap with Maureen grabbing a couple of hours of shut-eye.   On waking she was again keen to help with preparing our evening snack – ‘Lilly May Tea’: dedicated to her mother.  Apparently, her mum always steamed crumpets, so I carry on with the family tradition.

Following tea we did a couple of crosswords together.  One to be honest as we both struggeld with the clues of the second.  Our routine is I read out the clues and we take it in turn to answer.  Double points are awarded for silly answers – even more for suggestive ones!  Maureen tired as we both ran out of enthusiasm and decided to ‘close her eyes’ for a while.

Around 9 pm I tried to encourage her to go to bed and failed.  She said she was comfortable and it would be time to get up soon – obviously thinking it was morning.  So I decided to go to bed and woke a couple of hours later to hear her pottering about in the kitchen.   It took me quite some time to persuade her to join me in bed  but eventually I succeeded.

In retropsect I think we had a fairly normal day for a couple of our age.  It was cold outside, so we stayed in and had a restful Sunday.  I think the balance of  activity, stimulation and rest was about right.  It will be interesting to see what others think of  what the old folks got up to yesterday.

For the music lovers or ‘pop pickers’ I couldn’t resist this one: Lazy Sunday Afternoon

It’s 5.30 am in the morning and Maureen woke about an hour ago and got out of bed in a distressed state.  She was very confused about lots of things: particularly about who is in her bed.  I am not going to quote her as I couldn’t possibly recall her words.  Basically she is wondering why strange men get into her bed in the night?  She is talking about the importance of having her own private bedroom.  If people in the Office can’t sort things out, she will go to the Press.

I have had to use all sorts of strategies to try to calm her down.  I am hoping that  she can get back to sleep, although I am concerned about the amount of rest she has needed in the last few days. No such luck for me: I need to reflect on what has gone on, and review my plans for tomorrow..

This morning we are back to Maureen’s fears about men in her bed.  Such concerns often arise and her fear is palpable.  They continue to haunt her when confusion about where she is in her life history surfaces.  Those who are familiar with events in her life understand the origins of her concerns.

I no longer think our plans for tomorrow are safe: Maureen’s presentation this week has fluctuated more than ever.  It is no longer sensible to leave Maureen to her own devices for  more than a short periods of time.  There have been too many instances this week when she has woken up and been totally confused. The sensible option is to postpone my visit to Coventry until we can review Maureen’s current presentation and plan accordingly..

As a young lad I wanted to build a Charles Atlas type body.  For a while I went weight training several nights a week in an effort to enhance my slim build.  Like most body builders we lived by : ‘there’s no gain without pain’.  This phrase takes on particular resonance this morning.

I have an appointment at a Pain Management Clinic this afternoon to address the problems with my left shoulder.  It has got to the stage where painkillers are needed before it is possible to get to sleep at night. My legs aren’t too clever either, at the moment, with muscle pain waking me up early on most mornings.  I am hoping that this afternoons appointment spurs me on to stick to a schedule of exercises that eases my current levels of discomfort.  I know I haven’t been putting the work in and there’s ‘no gain without pain’.

There is another area where there is ‘no gain without pain’ but this time at an emotional level.  The time has come for a family discussion about the most supportive way to communicate with Maureen.  There are some members of the family ‘who don’t get it’.  Their communication with Maureen continues to be clumsy, and is causing distress.   Any conversation that reminds her of her faltering memory, spins her into a spiral of downward thoughts.  It just takes the wrong comment and down she goes thinking she ‘is mad’.  Imagine how she feels this morning being reminded, during a phone call yesterday evening, that she had forgotten a close family member’s birthday?   The  first thing she said this morning was: ‘I can’t believe I forgot his birthday’.   Now she is in a right state: thinking all sorts of negative thoughts.  I’m going to have my work cut out today!

Maureen often says: ‘What’s the plan Action Man’?  As there is no peace with the wicked dementia I have been continuing with my mission this morning.   I resorted to some of early morning  confidence building: helping Maureen to see that she is perfectly ok to be left to her own devices while I pop out to the shops for an hour.  That meant that she could stay warm in bed until my return, when she was sleeping peacefully.  Maureen has proved, on several occasions, that she doesn’t need baby-sitting and likes to be trusted to be left to her own devices.

On return from my shopping mission I woke her gently with another cup of tea in bed.  When she came downstairs for a late breakfast we practised filling the kettle, and making sure the lid was in place before it was switched on.  She is now singing along to a Joe Brown C D as she tidies up the kitchen.

It’s a dismal day here in Cleethorpes so we won’t be going far today.  As it is raining she has just put washing on the clothes horse rather than the line.  She is a busy bee doing all sorts of household chores as the afternoon progresses.

She may well sleep as I listen to the fortunes of the Sky Blues on the radio.  As a loyal Nottingham Forest fan she is unlikely to show as much interest in the match as me.  In fact she might just have a nap if my cheering when we score doesn’t keep her awake.

So ‘Action Man’ has been on the case today; attempting to build confidence as well as cognitive stimulation.  I might even suggest that we go into hold as ‘Strictly’ comes on the T V later.  Adult educators never retire they just watch their hair go white!

Maureen’s recovery from stroke is remarkable.  As I have said on many occasions when people meet her for the first time there are three things they do not believe: how old she is, that she has had a stroke and she has a diagnosis of dementia.  I would gamble that even the most astute psychologist would struggle to spot the symptoms when she has energy.  When she tires the signs of brain damage would be clear to the uninitiated.  What I am pondering this morning is do we continue with more of the same or move forward with a new agenda?  Well I have a cunning plan with Christmas looming we have a natural focus for what I have called our personal integrated stimulation therapy. 

Since coining IICST I have wandered into the field of neuroplasticity.  In simple terms my thinking has been moved on from the ‘use it or lose it’ approach to considering how the brain can heal itself.  I now realise I would be selling Maureen short if I just tried to keep her stimulated.  Preparing for Christmas can be fun and there is lots of ‘use it or lose it’ activities that can be undertaken in the build up to Santa’s arrival.  Buying presents and sending cards will build confidence but may not reach the parts that neuroplasticity offers: with ‘the sky being the limit’.

I have to confess that neuroplasticity is an extremely new concept to me, and I am far from well read on the subject.  From my cursory coverage of the subject two activities leap out at me from the screen of my tablet: learning a language and dancing.  They both offer the opportunity to learn something new and switch on something in the brain that leads to the equivalent of rewiring and the brain healing itself.  I hope those better read on the subject than I  will forgive this simplistic explanation.

The beauty of dancing and French are that we could naturally drift in that direction on these dark nights. We have all we all the material we need at our disposal and YouTube offers even more opportunities.  Astute readers of my Blog might well say he has said all this before: his rhetoric is strong but why doesn’t he just get on with it rather than pontificating?  Well when your wife decides to rest her eyes mid- afternoon and stays in bed for the rest of the night then it is a question of choosing the right moment My challenge is  spotting when Maureen has energy and knowing when she just needs to rest.  What’s life without it’s little challenges?  My conscience wouldn’t allow me to sit back accepting the limitations of departmental budgets and watching the inevitable progression of Maureen’s dementia!

It dawned on me the other day what drives the approach to dementia: it’s a resources led model.  It has taken me a while to try to make sense of what has happened to Maureen following stroke:  it’s predominantly a lack of resources that is pushing us down a road to nowhere.  It is financial expediency not any theoretical model that is driving the approach to dementia in this country.  A couple of statements from medical practitioners help to put the flesh on the bones of this rather stark assertion.

I recall a conversation with a G P’s, a couple of years ago, who asserted something along the lines of ‘we are trying to keep people alive beyong their sell by date’.  This may appear to be a cynical view but at a time of austerity, she is at the forefront of rationing dwindling resources.  Then we are told by the Clinical Psychologist from the Stroke Team that Maureen is being referred to the Memory Service because they have more resources to deal with dementia that her department.  A few months later Maureen is cast adrift by the Memory Service with a diagnosis of Vascular Dementia.  Then matters get worse as the protocol for treating dementia is Prescribed Disengagement (Swaffer): preparing for the end of your life.

My struggle in accepting this approach to dementia isn’t just that my wife is being placed on the scrap heap, and left to find her way to activities in the community.  It’s with a biomedical model from a mental health persective.  Yet dementia is brain injury!

If you are viewed as someone recovering from stroke then neuroplasticity features in any dialogue about treatment plans.  No wonder those in the Memory Service are frightened to use the term  DEMENTIA.   They know that once that dementia is the diagnosis you are sent out into the community to fend for yourself.  Once outside the system you are on your own: looking for somewehere to find something to your taste.  However, it is unlikely that NEUROPLASTICITY will be paramount in the minds of those kind folk in the community who are only trying to help.